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Quest Readership Survey: We Want to Hear From You

After listening to inspiring individuals with neuromuscular diseases and their families, the Muscular Dystrophy Association (MDA) launched a revitalized brand and new look for Quest Magazine in January 2016. We'd like to know what families think of Quest. Please take a few minutes to fill out the Quest Reader Survey and provide your feedback so we can continue to improve the information and resources we share in each issue.

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Seven Things Every New Mom Needs to Hear

Editor’s note: Read about Colleen Nichols’ experience of having a baby with a little help from technology in Love, Marriage, Science and a Baby Carriage. A college friend recently had her first baby, and after exchanging a few texts, I was reminded that there is a bit of new mom advice that every first-timer needs to hear. The days are long, and when you're unsure of what you're doing and experiencing, it's helpful to know that you're not the only one who thinks motherhood is hard.

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My First MDA Muscle Walk

To be honest, before the 2016 MDA Wichita Muscle Walk, I’d only donated to an organization seeking to find a cure for muscular dystrophy once. I’d grown up as the older sister of a wonderful, unique brother with congenital myotonic muscular dystrophy. Dustin was born when I was three, and I thought that he was just the way he was meant to be, and that I was lucky to have the brother I did.

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Love, Marriage, Science and a Baby Carriage

I’m not going to lie to you: Writing this article is making me sweat. I’m going to talk to you about a topic that changed my life in the most profound, positive way, but I still feel scared to share it. I was diagnosed with myotonic muscular dystrophy (MMD, or DM) when I was 20 years old. I had been dating my now-husband, Cory, for about a year, and I knew that he was the one. While I was head-over-heels and floating on cloud nine, I also struggled with a deep sense of dread and responsibility. 

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All in the Family

Michelle Murphy, a marketing coordinator from Albany, N.Y., with myotonic muscular dystrophy (MMD, or DM), has been running for as long as she can remember. So when she was diagnosed with MMD in the summer of 2014, she began looking for ways she could use her passion for running to raise money to fight the disease. 

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The Competitive Edge

Scott Hatley, 37, began playing adaptive sports soon after he was diagnosed with Duchenne muscular dystrophy (DMD) at age 4. He began with wheelchair basketball, playing with friends in his garage. From there, he went on to adaptive skiing, wheelchair rugby and a few other activities before finding his current passion, electric hockey. E-hockey relies on battery-powered carts that can zoom up to 10 mph and turn on a dime. 

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Choice Seating

Manufacturer, brand and model are merely the first choices in the methodical process of wheelchair seating assessment. These days, it’s wheelchair accessories that present the widest selection and biggest potential for enhancing independence and mobility. There are accessories for comfort, attachments for smoother rides and additions designed to maximize independence for people living with neuromuscular diseases. 

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Access MDA Summer 2016

When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock. “I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.

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Challenging the Nation to Live Unlimited

MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back. 

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Strength in Numbers: A Walk to Remember

“I am the captain of the Muscle Walk team Hope for Harrison. The team walks in honor of Harrison, my son, who was diagnosed with Duchenne muscular dystrophy in the summer of 2011. The biggest reason I support MDA is that MDA is about living a full life, including working to ensure those living with diseases like DMD live long, full lives.”  — Jessie Aldridge, parent

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Where to Stay When Away

The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair. 

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MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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